About Newborn Screening in Michigan

Program Overview:

Newborn Screening is a public health program required by Michigan law to find babies with rare but serious conditions that require early treatment. All babies need to be tested in order to find the small number who look healthy but have a rare medical condition. Babies with these conditions seem healthy at birth but can become very sick in a short time. Each year more than 200 Michigan babies, which is one in every 500 to 600 births, are found to have a condition detected by newborn screening.

When conditions are detected early, your baby can be started on an appropriate treatment plan that will help ensure the best outcome possible. Since these conditions are so time-sensitive, it is important that you give the birth hospital the name of your baby’s doctor as well as your current phone number and address so you can be reached if necessary after your baby leaves the hospital. The newborn screening follow-up staff will notify your baby’s doctor if screening suggests a health problem. You will be contacted regarding the next steps to take. With some results you will be asked to take your baby for a repeat newborn screen blood test. Other results may require additional testing at a pediatric sub-specialty clinic. Taking your baby for needed follow-up as soon as possible is crucial for you baby’s health.

How is Newborn Screening Paid for in ­­Michigan?

The newborn screening fee is calculated each year and supports the laboratory costs of screening, follow-up, and medical management for infants and children affected by the disorders. The current cost is $106.77 per baby. The cost is included in the hospital’s birthing and newborn nursery charges that are usually covered by insurance. If your child is born at home, a screening kit must be purchased. The fee can be waived for families with financial hardship. Please call 517-241-5583 to see if you qualify for a free screening.

Policies and Resources

While it is discouraged, parents may refuse to have their newborn screened for the various hidden conditions at birth. If parents object to newborn screening, they will be asked to sign a document that indicates that they have been informed of the risk to their newborn if screening is not performed. Birthing hospitals and attendants should develop this document with their legal department. A sample of the document may be found here: Parental Refusal Form.

A copy of the signed document will be forwarded to the newborn screening follow-up program.

Support for families:

One of the concerns families may have when they find out their child has been diagnosed with a condition through newborn screening is the increased cost of health care. Michigan offers many programs to help families take care of their loved ones. Since it is sometimes difficult for families to navigate state programs and available resources, a newborn screening nurse consultant is available to answer questions and offer support to families of infants and children who have been diagnosed with any of the newborn screening disorders. Call the toll free number (1-866-673-9939) and request a return call.

Children's Special Health Care Services (CSHCS) is a program within Michigan Department of Community Health (MDCH) to find, diagnose, and treat children in Michigan who have chronic illnesses or disabling conditions. Before a person can apply for CSHCS, MDCH must ensure their diagnosis qualifies. If it does, MDCH pays for needed medical services related to the child’s diagnosis.

CSHCS will pay for a diagnostic evaluation with an appropriate pediatric sub-specialist for any Michigan infant who fails a newborn screening, regardless of family income. If the child has private health insurance coverage, the insurance must be used first. Children diagnosed with a disorder on the Michigan newborn screening panel will usually qualify for CSHCS.

There is a fee to join CSHCS. This fee is waived if your child receives Medicaid or MIChild. Some ways that CSHCS can help:

Please call your local health department or the Family Phone Line (1-800-359-3722) to learn more about CSHCS.

The Children with Special Needs (CSN) Fund provides equipment and services for children with special health care needs that no other resources provide (including state or federal programs). In 1944, Dr. James T. Pardee, a founder of Dow Chemical, made a generous bequest of Dow Chemical Company stock to support children with special needs. While Dr. Pardee’s gift comprises the major portion of the Fund, many other organizations, businesses, individuals, and families have contributed over the years. Today the CSN Fund has grown to over $19 million dollars and has helped thousands of families of children with special needs. The CSN Fund is comprised entirely of private dollars and is administered through MDCH. More information about the CSN Fund can be found on the CSN Fund website.

The Family Support Network of Michigan (FSN) is for families who have children with special health needs. FSN helps families come together for emotional support. Trained parent volunteers offer practical suggestions for day-to-day living. Some of the services include:

Parent support groups

One-on-one support

Training programs for parents

Information about programs for brothers, sisters, fathers and grandparents

Storage and Use of Dried Blood Spots:

A few drops of blood taken from your baby’s heel are used to fill five spots on a filter paper card for newborn screening. These drops of blood are referred to as dried blood spots. Usually two dried blood spots are used for testing and the laboratory saves one full dried blood spot for use by the child or family in case it is ever needed in the future.

The laboratory routinely saves all remaining dried blood spots after newborn screening is completed, unless otherwise directed by a parent or legal representative. The leftover dried blood spots are labeled with a code, and then stored at the Michigan Neonatal Biobank, the storage facility for the Michigan BioTrust for Health (BioTrust). The BioTrust is a public health initiative to make leftover newborn screening dried blood spots more available for medical and health research.

In accordance with state law, the leftover dried blood spots may be used for medical research only if all directly identifying information (name, address, etc.) is removed. In most cases researchers will be given a small punch from a dried blood spot with no other readily identifiable information about the individual. The researcher will not know whose dried blood spots were used.

If a researcher needs readily identifiable information, such as a person’s name or address, MDCH will contact the person, if over age 18, or the person’s legal representative, to ask for written permission before the information is released. In rare cases, potentially identifying information could be provided to researchers. This would only be allowed after the BioTrust Scientific Advisory Board and the MDCH Institutional Review Board determined such information was essential for research and it was not possible to reach the person for permission. In this case, researchers would be required by law to protect the privacy of any information provided to them. Personal results from research tests are not given out. Learn more about the BioTrust program here.

As of May 1, 2010, parents are now asked at the time of delivery if they wish to make their child’s dried blood spots available for health research through the BioTrust. Dried blood spots collected after this date will be stored, but only used for research if written permission is granted. Parents may also choose to have their newborn’s leftover dried blood spots destroyed. Parents should complete the form here: Directive to Destroy Residual Newborn Screening Blood Specimen.

Dried blood spots collected prior to May 1, 2010 are stored and available for research through the BioTrust, unless a parent chooses to have the dried blood spots destroyed.